Conversations with ... Linda Emanuel, MD

GEORGE LUNDBERG, MD: Hello, and welcome. I'm Dr. George Lundberg, Editor-at-Large for MedPage Today, and we're in Chicago having a conversation with Dr. Linda Emanuel, who is Professor of Geriatric Medicine at the medical school at Northwestern University, and a super expert on a lot of things, but in particular death and dying.

Linda was educated in Cambridge, Oxford, and Harvard. In other words, she has pretty good credentials, so thank you for being with us today; we appreciate it.

LINDA EMANUEL, MD: Thanks for having me.

LUNDBERG: Linda, I mean how many years has it been since I published in JAMA your paper on advance directives. In which you and a co-author with a similar name had a page that people -- patients and doctors -- were encouraged to photocopy that.

EMANUEL: Um-hmm.

LUNDBERG: And they could check off four ... well, do you remember when that was?

EMANUEL: No, I don't. Actually it was ...

LUNDBERG: A long time.

EMANUEL: A long time. In the late 80s, I think, '89, I think. That's what it was.

LUNDBERG: At that time, hardly anybody even knew what you were talking about. And we tried very hard to educate people.

EMANUEL: Yeah.

LUNDBERG: How is it doing? How's it been going with that whole thing over the last 20 years?

EMANUEL: That paper was actually widely misemphasized. I won't say misunderstood, but misemphasized, and that was our fault, because we published the checklist. But we were not really trying to make a checklist. We were trying to make what might be better termed an impressionistic portrait of what a person wants. If every check was a dot on an impressionistic painting, that's what we were looking for.

We were not looking for 44 or 66 miniature informed consent decisions, not at all. We were trying to get at the core of what a person cares about.

So what that has evolved into, and it's really very interesting, is it turns out that a person's goals for treatment in a given scenario, as you recall, that list or grid was a series of scenarios.

LUNDBERG: Right.

EMANUEL: They were more or less ordered by how poor the prognosis was.

LUNDBERG: Yes.

EMANUEL: And the list on the other axis, if you will, were interventions more or less ordered by the invasiveness. So when we redrafted that, we put goals for care under each scenario.

LUNDBERG: Okay.

EMANUEL: And it turns out -- and we published that in the Journal of American Geriatrics Society. And it turns out that those goals predict what people want in the individual boxes for individual treatments very well.

So really, if you only can get one thing from the patient and that's their goals for care under a particular scenario, that's progress, because then you can give that to a physician. You can give that to a proxy.

You can learn about yourself and it makes sense. It's not counterintuitive the way a checklist is.

LUNDBERG: Right.

EMANUEL: Okay, so that's progress. But people have a very difficult time, all of us, physicians included, have a very difficult time thinking in terms of scenarios that haven't happened yet. So the more recent insights that we've had -- and our early research bears this out -- is that people can find what their threshold is.

So if people go through the exercise of doing this grid and thinking about their goals, they will find -- and really, over 90% of people have a discernible threshold -- they will find themselves at some particular threshold saying "I don't know." And then right after that, they'll say, "Go for palliative care. Comfort and quality of life is what matters to me if it's that bad."

And prior to that, they'll say "Go for life; it's worth it for me to undergo intervention."

LUNDBERG: Right.

EMANUEL: So that threshold is really the most important thing about a person.

And it turns out that the threshold is predicated really on three driving elements: prognosis, invasiveness or burdensomeness of treatment, and level of disability.

So we have the opportunity now of giving a person an exercise in which they can be coded according to those three things, so it's almost like a TMN. It's almost like a, you know, coding of the extent of a tumor's metastasis in the body; it's three features.

If you know those about yourself, a.) you've learned a lot about yourself; b.) you've told your proxy a lot about yourself; and c.) you've told your doctor in a way that your doctor can put down in their electronic medical record and use in a way that will predict in an accurate fashion.

LUNDBERG: Who is the action person to make this happen?

EMANUEL: Well, what needs to happen to make this all operationalized is that it starts around the kitchen table or wherever families interact. And they go through a worksheet and they say, "Oh, look. If I go through this worksheet, it looks like I care about prognosis thus and so, I care about disability thus and so. I guess I come out with this coding. And now let's see, what does that mean to you, my proxy, my spouse, family member, whoever, and does that feel comfortable?"

And if all of that -- and that could be very nicely done as an app for a computer.

And if it turns out the person feels like they have gained insight about themselves, if it feels comfortable and feels right, then they take it to the doctor, and the doctor needs to be able to apply that.

LUNDBERG: So you're aiming this largely at patients, not physicians, at this point.

EMANUEL: It's a team affair. All healthcare is a team affair.

LUNDBERG: Sure.

EMANUEL: It needs to start with a patient. It needs to be comfortable to the patient and the proxy. We don't need the doctors for that. That's a very individual, personal thing. Once that's done, the nice thing about this approach is that it can then be brought to the physician in a way in which the physician knows how to use it.

LUNDBERG: Okay. What do you think of those hospital systems in which there's a check-off form upon admission to the hospital? Do you have a living will? Do you have an advanced directive? How widespread is that, and how well does that work?

EMANUEL: It's now widespread, and it doesn't work very well unless you have a document that a physician can use.

LUNDBERG: And that's what you're talking about.

EMANUEL: Right.

LUNDBERG: Okay. Well, this is hugely important, and I know you've worked on it for a very long time. It sounds like you're making progress on a research level. Now the matter of implementing this in a widespread area is something that maybe a conversation like this could help with. So thank you very much for sharing this with us, Dr. Linda Emanuel, from Northwestern University, working in the death and dying palliative care hospice field for a long time. Thank you.

EMANUEL: Thank you very much.

LUNDBERG: And thank you for being with us as well. I'm Dr. George Lundberg, Editor-at-Large for MedPage Today, signing off.

Accessibility Statement

At MedPage Today, we are committed to ensuring that individuals with disabilities can access all of the content offered by MedPage Today through our website and other properties. If you are having trouble accessing www.medpagetoday.com, MedPageToday's mobile apps, please email legal@ziffdavis.com for assistance. Please put "ADA Inquiry" in the subject line of your email.